Thursday, July 28, 2011

I don't know how you do it

Let me preface this post by saying that this is not brought on by anybody in my life or in my recent encounters. So, please do not re-examine every interaction you've had with me in the course of your relationship with me. This post comes from the discussions I have been following on various support forums as well as on Facebook posts from the Children's Hospital Boston and Parents Magazine. The posts have centered around the top things parents with special needs or chronically ill children don't want you to say.

Now, we all have to admit there are insensitive and uncaring people out there. There are also people who don't think of the impact of their words before they leave their mouths. They are curious, or they have no filter - I accept that these people exist. I once had a mom who said to me, after working with Molly's class, "Your daughter absolutely needs a 1 on 1 aid, she can't even hold a crayon." Now, I knew this, and I had probably shared this sentiment with friends in a different way. But this mother, with no expertise, just decided to shout it out across a crowd of parents. I have a good friend who still wants to jump her and it happened over a year ago! Insensitivity is one thing, but caring and not knowing how to express it, is clearly another.

I was really put off by the discussions that resulted from these posts. Some of these parents of special needs kids were down right offended by someone saying "I don't know how you do it" or "I don't think I could do it if I were in your shoes". Now, I will admit, I was not a member of the audience to witness the tone of these comments, but the thought that it would be insulting has been bothering me.

Upon hearing my story or a day in my life, or what have you - I get this comment a lot. I've always taken it to mean that they person listening to me or observing me is truly in awe of the struggles that life presents us. They are trying to commiserate, but without having direct experience to draw upon, expressing that is the best they can do. I see it as someone admiring me and what I do daily.

I don't think I'm all that special. I think that just about anybody put in my position would do what I do. I've gotten to know a great deal of parents with special needs kids. It does change you. It changed me for the better. Are there days when I wish I could trade places with the parents of typical children? Sure, but only for about 5 minutes. Some of the quirks that make Molly and Kennedy "special" are also what make them Molly and Kennedy - and I wouldn't change who they are for a second!

So, my answer to people who express the sentiment of "I don't know how you do it" is, I don't know how I do it either, I just do. This life is my typical. I find my strength in my girls, and in my faith that I've been put here for a purpose. That purpose may not always be clear and the path may not always be easy - but it's our lives and we're thankful for each day we get.

My mom shared with me a sweet story a few years ago after an event that changed me. Molly was probably about 2 1/2 and we had gone through a horrible medication change, where I didn't know who my little girl was. She would meltdown at the drop of a hat. We couldn't go any where in public without her screaming her head off - it was a very difficult time. She was always a taller child (after she outgrew the preemie stage) and looked older anyway. We took her to Friendly's - a kid friendly restaurant. She was tired, she was altered and she was crying. I was trying everything. An older woman in the booth behind us leaned over to Molly and said "you need to be quiet you are hurting my ears". With tears in my eyes, I picked Molly up, told my mom to cancel our orders, apologized to the waiter loud enough so the woman would hear and said, "I'm sorry, she has special needs and she just doesn't understand". I bawled my eyes out. It wasn't that the woman was so callous towards my daughter. It was just that that was the first time I realized this was my new world and my life. That I wouldn't have those typical excursions that other families were enjoying. Of course, I've come a long way since that day. I've found ways to help the girls cope, I structure excursions around their schedules and not mine, I even utilize technology if they have to wait. We have structured our lives to make them successful in the outside world.

After that moment in my life, my mom told me something along these lines. She had been traveling for work for quite some time and would encounter many families and children on airplanes. Her first instinct at a child throwing a tantrum in the middle of the airport or having a meltdown at a restaurant had always been to judge the parents. What weren't they doing, what were they doing wrong? She told me that since having Molly in her life, she's learned that it isn't always the parents. There are so many kids out there that just can't help it. Now, I'm not excusing every poorly behaved of tantrum-throwing child you encounter, but I do think that before you judge, you should consider the possibility that the child's behavior is out of the parent's control for medical reasons.

Feel free to ask me questions about my girls. When you ask me, I know you are trying to understand our lives and them. You are being my friend and you are showing you care. Just know, not every parent of special needs kids feels this way - a reality check to me! So perhaps instead of "I don't know how you do it", you could instead just ask them how they are doing or how the child is doing. Never worry about what you say to me! I'll always give you a straight forward answer. I'm human, there are bad days and there are amazing days and then there is every other day. One thing never changes though, I do it because of my two very special little girls!

Wednesday, July 27, 2011


Remember the days when vacations were relaxing and you hadn't a care in the world? Yeah - not so much anymore! I learned very early on in my life that Mom always must check the bags before leaving on a trip. I am, of course, referencing an unforgettable family trip up north. We were about 4 hours from home when we started questioning my youngest sister on her packing. About a half hour later, she realized she hadn't packed a stitch of underwear. Watching my parents scour the racks of the convenience store for underwear was quite amusing. I think she ended up with designer underwear from one of the premium outlets. From then on, I have ALWAYS packed extra underwear when she travels with us. even if my shapely figure requires more fabric then her slim and toned one!

And so here we are, on the cusp of another vacation, gearing up to pack for a week at the family cottage. A wonderful place where there is limited solar power, and a gas-powered stove and fridge. The storage is limited, the space is small, and it is a boat ride and car ride to any "off-island" activities. And then there is my dad, who can somehow survive the week with one small duffle bag. He somehow forgets that somebody had to bring all the food we eat! But nonetheless, ever the pleaser - I am aiming for compact and consolidated.

I've had my years. There was the year where we brought Molly's dollhouse, all the accessories, multiple baby devices, enough snacks to be stranded for a month. I've definitely earned the scrutiny - but I try. It's so hard to not worry about forgetting something! Thank goodness dad wasn't around when we drove to Florida with a 4 year old and a 13 month old. I'm not even sure how we fit Jen in the back of the van to drop her off at the airport! And so here I am. I try to make a list, and then I add to the list, and then I subtract - it goes on and on.

What do you leave behind? What do you take? Am I making a big gamble by leaving the DVD player at home and only bringing the IPADs? They will both need blankets, sweatshirts, pants - just in case it (hopefully) gets cold. And then there is the changes of clothing - they don't need to be fashion models, but they don't need to be dirty. My kids can literally be within sight of a messy food or drink and be dirty from head to toe. I know, the apple doesn't fall far from the tree on that one! Ok... so then I need the daily meds, but I also need the in case meds. In case there is a seizure, in case there is a fever, and then the grown up meds... It's not so easy to run around the corner to the pharmacy. We'll need snacks, food for 3 meals a day for 8 days, sunscreen, bathing suits, water shoes, "going to town" clothes, batteries... Oh man - I'm up to a car full already and I haven't actually packed anything.

I'm thankful we are leaving on a Sunday this year, it leaves me all day Saturday to get stuff accomplished in between grocery shopping, cleaning up and out the house, entertaining two small children, and maybe putting my feet up?? Vacation used to be relaxing, when my mom took care of all this stuff. When I didn't have to worry about keeping my 2 year old quiet for a few hours every morning so the rest of cottage can sleep until a decent hour, like 7. At least I will have porch-Scrabble to look forward to every morning, I'm up against the beast of the 2-letter words!

Ah packing! You crazy beast - and then there is unpacking, putting everything away for a week and then re-packing. Sure, I'll get it all in bags and boxes and into the van, then out of the van and into the boat, then out of the boat and into the cottage.All the while, I need to make sure Molly and Kennedy stay in their life jackets and don't get buried under stuff, knocked off a boat, or tripped over in the process. So - happy vacation! Hopefully the 2 kids on the verge of sickness swing back to healthy instead of getting worse and we have a wonderful time at the cottage!

Seriously, what would he have done without the rain gear?

View from the boat on the way over

Dad and Molly on a garbage run.

Using the DVD player

There she is - our home by the sea!

Tuesday, July 26, 2011

The best laid plans..

Last night I went to bed with fantastic plans for today. Kennedy and I were going to drop Molly off at school and then meet up with a good friend to do a little scouting around for an end of summer school project for Molly's class. With 8 kids, all with different allergies & sensitivities, we really can't send in a food treat. And with the rules regarding food anyway.... let's just say I've sent in donuts (by request) masqueraded as breakfast buns, and cupcakes as muffins. I've also done an entire preschool birthday celebration with sugar-free pudding and SNACKWELL cookies. But I digress, we were going to look for an easy tangible craft the kids could take home to remember the summer. Then we were going to get coffee. It was going to be a wonderful and relaxing day.

Instead, Molly woke up at 4am and was in my bed by 5am. There was nothing wrong that I could tell except she seemed agitated and she has a rash. Little red dots spotted her chest, belly and entire back. "Great" I sleepily thought to myself, plans changed again.... By 7:30am, Molly's morning "nap" was over and she was in full agitation mode. If you've never seen this, it's something to behold, and it's the biggest clue I have to something being "off" with her, since she can't tell me. A lot of kids on the autistic spectrum do something called stimming. It's often seen in hand flaps, or hand ringing, or body rocking etc. Molly's stimming, like her cognitive abilities, is much more complex and involved. She talks about a mile a minute weaving complex themes of various stories she's heard or seen while walking in very fast circles or back and forth from her bedroom to the couch. The doctor has actually seen her do this, it can go on for a little as 10 minutes or for hours. The only way I've found to break it, is to give her a tangible electronic distraction (read: Ipad). This will calm her. We haven't seen this stimming in quite a while. We usually see it prior to an illness or when she feels just yucky enough but not full blown sick. This pattern started yesterday, she walked so fast, she fell on the Strawberry Shortcake car...

So, Dr. Mom put the stimming together with the horrible sleep with the rash and made the executive decision to call the actual doctor before taking her to school. We were bounced around from appointment to appointment because they insisted we see Molly's pediatrician, who didn't have an opening until late afternoon.... boo! Molly was not happy to miss school and the trip to the computer lab. She was actually angry with me - she told me so! I diffused the anger with the promise of a trip to Target (I needed bread anyway) where we picked out new nail polish colors for our summer toes. So my new plans took shape.

During all this planning I realized we'd hit that point in the month where the $30 co-pay would have to come from somewhere else. Ever resourceful, I told the girls we were going on a treasure hunt to turn all our coins to dollars. They were very excited to visit the coinstar machine (where we turned our coins into $62!). The girls were so good today - even with the plans sprung on them. We handled the post office, the coinstar machine, and target before coming home. They played, they ate lunch, Kennedy went down for a nap and we pretended Molly's room was a computer lab. We had to leave at 2:30pm to get to the doctor on time. Kennedy woke from her nap on her own, which was odd and then I noticed the very distinct sounds of a swollen windpipe - there is no mistaking the bark of croup. She's not coughing much, but if she starts - it's going to be a long night - and of course the doctor appointment wasn't for her!

We went to the doctor. I do love him, if I haven't said that before! He thinks Molly's rash is brought on by sweat, or wet skin and rubbing of fabrics, but he wasn't sure - it wasn't a clear-cut answer. He agreed to test her for strep (which was negative thankfully!) even though we didn't think that's what it was (she's had just the rash and strep before). I don't think it's just a skin rash, I think it's a viral symptom and Molly and Kennedy are both processing the same cold or virus in different manners. So now, my plans for the rest of the week are up in the air!

The girls were so good at the doctor that when Molly asked for a smoothie, I took our Rita's coupon and agreed to go there. She was very excited to order a mango-smoothie. She was not so excited when I told her it was shower night. Instead of forcing her to shower (which I've had to do before) I made a plan. How about we eat our Rita's, then shower and get in our jammies. Then I would spread a big blanket out and we could have PJ Picnic dinner - She thought this was great! The evening progressed and we are happily finishing up the Strawberry Shortcake Movie with varying degrees of stuffy noses and sleepy faces. Bedtime is soon!

After all this time, I still get sad when plans get changed. It's part of it all. I strongly dislike this waiting stage - waiting to see if their going to get sicker, waiting to see if a seizure is coming, just not knowing.... I can handle things much better when I know what I'm dealing with - the unknown is frightening and full of too many possibilities! My plans changed and developed by the minute today, but when I forced myself to make my errands center around the kid's involvement, the day went pretty well. I hope my brain can keep up for tomorrow's plans!

Monday, July 25, 2011

Baking with kids

 My Meme made it look so easy. She used to gather 2 or 3 of us at a time for a festival of Christmas cookie baking and decorating. I'm sure her kitchen was covered in cookie dough and unmentionable frosting colors - but I don't remember any of that. All I remember is her loving smile as she encouraged us to make beautiful cookies in literally every shade imaginable. Cookie baking day is one of my favorite memories growing up, such a beloved tradition that we prodded Meme along well into her 70s hosting cookie day.

Then the time came to make cookies of my own. Of course, I had to call her up to get recipes and hints - nobody's cut-outs tasted quite like hers. The thing of it is, she really didn't love cooking and baking - but she loved being with us. And so I went a few years baking cookies on my own and with my sisters, trying to recreate those beloved days. The cookies were good, the memories cherished, but it wasn't the same. Meme's cookie day was just something unique!

These days, I can't call her on the phone anymore to ask for the perfect recipe or to wonder out loud to her how she didn't throw in the towel when cookie dough was clearly caked over everything. She can't answer the phone, so I call her in my head. I often find myself stopping and saying a silent prayer to my beloved grandmother to give me the strength and patience to bake with kids. I guarantee she watches us during the moments getting a pretty good chuckle at my attempts!

I tried to recreate cookie day past Christmas with my girls. With the over-zealousness that often decorates my plans and ideas, I sat Molly and Kennedy at the kitchen table. I let them help me roll the dough flat and cut out the cookies, but I only had 2 hands, and while I worked with one girl the other (usually Kennedy) was throwing dough about the room or painting themselves with flower. The 15 minute cookie cutting session resulted in a half-hour clean up, the 2 of them soaking in a bubble bath while I rushed around to clean up everything they could possibly get into again from the table, the chairs, the wall, the floor, my clothes...etc... I prayed pretty hard to Meme, and didn't lose my cool - but vowed to do it different next time. Those cookies never saw frosting from the kiddos!

It shouldn't be a wonder that I've baked during nap time from that point forward! Until today that is. Molly and I had decided to turn our extra blueberries into a blueberry cake. She was so excited to help. And so I said a little prayer to Meme, pulled out the Kitchen-Aid and got started. I divided up the jobs on the spot. Molly could handle "put this in the garbage", "get the  milk (nearly empty) from the fridge", or "help me scoop and pour 3 times". Kennedy was instrumental in moving the Vanilla extract from one spot to another and in scooping some sugar. The girls were happy because they were included and I was happy because clean-up only took 5 minutes.

What I learned from Meme was patience and just enjoying being with the kids. What I learned from my kids was to keep the tasks within their reach, and not to expect them to suddenly be the neatest kids ever when messiness is right at their fingertips. When I made things tangible and well within their grasp - the results were so much more calming! The Blueberry cake is now in the oven, we'll see how it turns out, but it doesn't really matter. The kids are smiling, they had fun and of course they are clambering for some dinner!

Cookie Baking - Christmas 2010   

Saturday, July 23, 2011

To work or not to work

There was a study posted on NBC Connecticut yesterday talking of the studies linked to stay at home mom's versus working moms and the impact it has on the children. Just like all the studies out there for some people the results will hold true and for some they won't. I, personally believe, that the family structure and responsibilities should be determined by the individual family, and not a study.

When Molly was born 6 weeks prematurely, it never crossed my mind that I would be a stay at home mom. Chris was working his way up the cooperate ladder, but had just changed jobs to open himself up to more opportunities for growth. I had found a home day care for Molly to attend, and had planned to take the 8 paid weeks allotted to me for my c-section delivery. When she was so small and in need of so much, I decided to use my FMLA and extended my leave to 12 weeks. Molly entered the world of day care at 3 months old and weighing less then 10 lbs. It was a heart wrenching decision to leave her, I actually felt guilty. I wanted to work, I thrived from working. Being alone with a newborn who depended solely on me scared the crap out of me! Then Molly started getting sick a lot and we in turn got sick. All these new germs were invading our house - yuck! The home daycare was a loving place, but she confirmed what I already knew - Molly was a handful. And I was, essentially, a single mom during the day. I had all the love and support that I needed, without a doubt, but I only had 2 hands and was by myself - and it terrified me!

When Molly was 6 months old, the home daycare closed and we had to find a place. I decided I wanted her in a small center that would both nurture her and teach her. Somewhere where she could interact with other children her age, but also get plenty of attention. We found a great daycare, right on the way to my job. She transitioned (eventually) and life moved forward. She still got sick a lot, but she was well cared for! Then December 4, 2006 happened. She had her first seizure at daycare, she scared them senseless, and the thought of losing her snapped me out of the timid new mommy-ness I had been experiencing. I grew-up that day. There is something about holding Oxygen over your child's mouth in the ER, and then watching helplessly as doctors administer medication after medication and run test after test.... I just knew that I would do ANYTHING for my baby. From that moment on my life changed.

I continued to work, but my teaching career suddenly didn't hold the passion it once did. My passion was in helping Molly, in finding out what was wrong and how to fix it. I was rushing to therapy sessions scheduled right after school, so I could be a part of them. My heart was torn. I was so devoted to my students, and to giving them a wonderful musical and theatrical experience - but I could no longer be the teacher I wanted to be. But, we had medical benefits with my job, and at that point, that could not be matched.

In 2008 we found out we'd be expecting Kennedy. Chris and I had a long talk and made a decision. The cost of 2 daycare tuition payments compared to my salary, meant I was working for less the $8,000 a year. He and I concluded together that the stress of scrambling for sick days, doctors appointments, therapy appointments, school meetings, etc - was not worth $8,000. We would stop going out to eat, we would cut back on the expendables and we would make it work. The day we made that decision, it was like the weight of the world had been lifted from my shoulders.

Kennedy turned out to be an equally, if not more so, challenging baby. She would scream for hours on end, in pain from reflux. Her spells looked like seizures and we were terrified. Molly was 3 when Kennedy was born, but unlike most 3 year old children, Molly, at the time, was like a very large 18-24month old. She had little language, trouble getting about, couldn't use the bathroom, and did very little for herself. I had my hands full! Over time, we got into a routine, largely dictated by Molly's school schedule. She had started an integrated preschool program 3 weeks before Kennedy was born. Life progressed in a whirlwind of good days and sick days - but we kept moving forward.

Our days are still dictated by school schedules and routines. Kennedy's birth to 3 therapists come out 3 times a week, and we schedule play dates to encourage her interactions with other children. I started working, volunteer, on the board for the Dravet Syndrome Foundation, and I take care of our house as well as being a room-mom for Molly's class. I can't believe I ever thought I'd be bored as a stay at home mom.

This is the life style that works for us. It doesn't work for everyone. I don't know what the future has in store for us. I have many ideas out there on the horizon of things I still want to accomplish, but right now - I'm happy being where I am!

March 2009

Thursday, July 21, 2011

Just another morning

Our day starts well before my ideal 7am wake-up time. Chris has to be out of the house by 6:40am, at the latest most days. Kennedy senses that she needs to see her Daddy and often graces us with her sweet sounds somewhere between 5am and 5:30am. Luckily we've now trained her that if Daddy comes in she's getting a new diaper, a cup and her music turned on. Then her door is shut and it's up to us how loud the monitor is on. She's in a toddler bed, so she could get out and play with the plethora of toys in her bedroom, but most of the time she prefers to nestle in her bed with 10 various stuffed things and a few books. Guessing Molly's wake-up time is like playing the lottery - you never know. She could sleep through the atomic bomb at some points of the night, but I often hear her moving about her bed and find her in some of the strangest positions. Because of their various issues we have video monitors trained on both of them and we see some of the silliest things! Anyway, back to our day.

I've usually spent my night with one eye or one ear open, and the deep sleep is often hard to come by. It is even harder to come out of! By about 6:30am I am prying my eyes open and wiping away the sleep to see what Bob Maxon has in store for our weather. This helps me determine clothing, if I should fill the kids pools, or if we could possibly venture out to a zoo. I drag myself from my rather comfy bed and try to get a shower - more to train my massive head of hair and to make sure I don't stink too bad then for any other reason! Molly is often greeting me at the end of my shower and off we go.

This morning I said, Molly find your Thursday underpants. This has been a great way to teach the days of the week and help her know what day it is. She's also insistent that she wear the correct day. Anyway, I asked her to get her underpants. She headed in the wrong direction. I asked again. She responded something about Pirates. Figuring the third time was the charm, I asked again - she told me today was music day at school. I gave up at this point and dug out the Thursday underpants myself. I helped her with the bathroom and brushing her teeth. Then I went and prepped her meds - a sprinkle cap opened on a spoon of whipped cream - and got her the requested cup of Orange Juice (95% water in the cup then a splash of juice - she loves it and it makes the very expensive OJ last much longer!). By this time it's about 7:15am. We got her dressed quickly. She's requested a skirt, so we choose a pink skirt and tank top. I help her with every article of clothing and leave her socks on the couch next to her with instructions to put her socks on.

I run to get dressed, since I can't possibly complete any more tasks with heavy wet hair and a bath towel for my stylish clothes. By this time, my poor neglected Kennedy has reached the end of her music CD, is done reading books and ready to be mobile. I open her door and am greeted by a smiling little girl. She bolts out of bed to find her sister. I catch up to discover that Molly's socks are where I have left them and Molly is lying on the couch next to them and Kennedy is already running asking for "mink". I get her cup ready and Molly is requesting breakfast. We negotiate a bit, I swear she thinks this is a restaurant, and she agrees to eggs with cheese, toast and banana. This is quite a hefty order compared to the usual bowl of cereal - but I figure the protein is good. Kennedy won't eat eggs so I make her some toast and decide I might as well make me some too - since yesterday there was no breakfast until lunch time.

While I make breakfast, Kennedy has scurried underfoot at least a dozen times. I check on Molly while the eggs cook and the toast, well toasts. The socks are still next to her. I give up and put them on her feet. I can see the zoney look in her eyes - she's on another wavelength today and I need her to catch-up to my speed. Alas, I must adjust to hers.

I get breakfast on the table and the girls converge like people who have never seen food before. I find myself running a continuous stream of "chew", "not so much" , "no peanut butter in your hair", and "don't throw that at your sister". Normally I would like to sit with the girls and plan the day as we eat breakfast, but there is too much to get accomplished. I eat my toast and drink my keurig cup of coffee, which gets spit out because I stirred it with a dirty spoon and get a chunk of something in a sip, while I stand and prepare Molly's lunch. She refuses to eat the free lunches that come as part of the summer school program and she refuses sandwiches. So I try to create a balanced lunch with things she'll eat. In goes a yogurt, a cheese stick, some fresh fruit in a cup, a water-juice box (love those!), pretzels, an ice pack, fork and spoon. I pat myself on the back - I didn't forget an item today - the cheese stick was left out accidentally last week - and the admonishment I got from my five year old was rather pointed! I will not forget again! Now my vacuum-eater daughters have finished their breakfasts. A mixture of crumbs and goo adorn their faces, hands and clothes. I clean them up and strip Kennedy. I've picked out her outfit, which she stubbornly refuses and insists upon a dress. I don't even fight it - she picks a dress and I fix her hair and then fix Molly's hair.

It's now 8:15am. I've remembered our play date scheduled for after we drop Molly off, but only just remembered the peanut allergy and the fact that Keddy had Peanut Butter for breakfast. I break out the cleaning supplies and scrub and vacuum the kitchen, the chairs and the table. The girls have since taken out multiple toys.and are well into their elaborate play schemes. We need to leave our front door at 8:40am to have enough time to get in the car and make it across town for summer school. At 8:30am I ask Molly if she has to use the bathroom, she declines but my detective nose knows that Kennedy has a gift for the diaper fairy (if only!). I scoop her up and head to the changing table while instructing Molly to find her shoes. She actually hears me, but pulls out her Sketchers, which she knows she can't wear to school. She asks, I remind her, she replaces the shoes but doesn't get another pair - my bad, I wasn't specific enough. I ask her again to find shoes, but now she's sitting on the floor of Kennedy's room playing dollhouse. I break the play with a reminder that it is not time to play, but time for shoes. She finally goes to get them, I sit her down to help get them on and ask Kennedy to get my shoes. Keddy picks out brown flip flops, I put them on, but would much prefer my broken in pair. While she's not looking, I switch my shoes and help her into her purple flip flops. Kennedy, of course, notices I've changed my shoes and yells at me. I cave and change my shoes. It's 8:40am

I grab the bag, and the keys and then remember to sunscreen Molly. I grab everything again and direct the kids to the door. Their both distracted by something again. Finally at 8:42 we are out our front door. Now I just have to get them down the stairs (Molly an unstable walker and Kennedy new to the whole climbing thing, and fiercely independent), in to the car (both insist they have to be first), make sure the air conditioner is cranked up high enough so Molly is ok, get them in their car seats (which neither can buckle once they are in them), and drive to school. The minute my car is on the street I feel my whole body relax. Another morning routine conquered and a 20 minute break in the car (10 mins there, 10 back) before the day time routines begin.

Only about 11hours until Chris is home and the girls are snug in their beds.... It's hectic, but it's my reality and I really think I like it!

Wednesday, July 20, 2011

The Scary "A" word

You know the book the Scarlet Letter? Well, guess what, if every child diagnosed with an Autism Spectrum Disorder walked around with a Giant "A" on their chest - I think people's jaws would drop. We've all been educated by the media of what "classic autism" looks like (ex: Rainman) and I must say, NBC's Parenthood is doing a great job of bringing Asperger's (very high functioning autism with certain characteristics) into the public's eye. But, I find myself thinking, where do my girls fit in with these pictures?

The truth is, the don't. But they have Autism Spectrum Disorder. Both were tested, by 2 different organizations, and both had a resulting diagnosis of PDD-NOS. In layman's terms it means they have enough autistic characteristics but don't fit into any of the other categories. According to Molly's doctor, fairly soon the DSM (diagnostic and Statistical Manual of Mental Disorders) will release another update. The confusing sub-classes of Autism such as PDD-NOS will be taken out and all will be classified as Autism Spectrum Disorders.

We met with Molly's doctors yesterday up in Boston. Molly was a gem. She was polite, she coped with all the traffic "jelly" as my father has taught her to say and even found some "traffic peanut butter". She observed the red roofs and the river and asked if we were close to China. Molly had an hour and a half development appointment, a half hour neuro appointment and then had to have blood work done. She's been complaining of belly pain, and with her high pain threshold and usual lack of complaint, we thought it best to test her pancreatic functions as well as her liver, depakote level, CBC and the rest of the routine set. We'll see what that says. The phlebotomy techs were blown away by Molly. She sat in the chair extended her arm, didn't make a peep. They putt on the tourniquet, and cleaned her arm. She looks at them, says "I'm ready" I say "like a statue Molly" she holds still and blows out her birthday candle as the tech inserts the needle. No tears, no fuss - just awe at the band aid they place in the crook of her arm.

The biggest thing at her appointments yesterday was the doc's decision to remove the provisional from Molly's autism diagnosis and to make her main diagnosis (in combination with seizure disorder) followed by the ADHD and the Dev. coordination disorder. Yikes - right? It's not that I didn't see it coming. I know Molly's play skills are very immature, her eye contact difficult to obtain, her attention in left field, her days driven by routine, her speech patterns questionable and her desire to retreat into technology high - but it still takes a minute to digest that we are going with the official diagnosis.

Over the years we've been able to process all of this and we know Molly is so much more then a diagnosis. She's a complex kid both medically and developmentally. She doesn't fit into a mold, it's more like she's created a new one and Kennedy fits into a lot of it. Which brings about our interesting conversation. Our neuro is both a practicing epileptologist/pedi neurologist and a researcher. It turns out there is a new technology to sequence something like 20,000 of our genes and pull out all the ones that have atypical variants. They will then be able to look at the variants, and which ones they know cause certain disorders. Then they can compare the similarities in the girl's variants. This is a major step in figuring out what's going on with the girls. We can almost guarantee that it's something genetic and it's something - but since I developed normally (despite my 3 febrile seizures - very common) there isn't a real tie into the girl's development issues.

I feel like I have to learn a brand new language every time we go to a doctor's appointment. It's fascinating but even if we had a reason, it wouldn't change treatment at this point. It may give us an idea of what the future holds, but no certainty. In the back of our minds is always the risk that Molly might lose the decent seizure control she has or that Kennedy could start having seizures. And so, we embrace the "A" word, and like Lord Voldemort, we say it out loud - AUTISM. It doesn't seem so scary any more. You see, it's still just Molly and Kennedy. Two little princesses trying their hardest in this world!

photo by Athina Loveland Photography

Monday, July 18, 2011

My husband, my partner

As yesterday was our 7 year anniversary - I feel it's only appropriate to spend a blog on my other half. Chris and I met in college. He was directing Shakespeare, I signed on to assist him. We dated, we didn't date, we dated again and then the May of my graduation we went to Disneyworld together with a group of friends. Since he was a year ahead of me, and lived in NJ while I was in CT - we only saw each other on weekends, spoke through emails and phone calls and tried our hardest to navigate his first grown-up job and my student teaching. When we went to Disney, we spent an entire, un-interrupted week together for the first time. I swear, I fell in love with him on a completely new level and I knew we would spend the rest of our lives together (with multiple trips to Disney!) He proposed on Christmas Eve of that year and a rather lengthy 19 months later, we were married.

Our wedding was an event to remember. And I do remember it. Chris and I decided that we would not drink, we wanted to enjoy ourselves and not regret anything in the morning! I don't think our dance floor was ever empty. I enjoyed every minute of my wedding day from my 7am breakfast with the bridesmaids, to relaxing with a small group of friends in the living room of our suite until 2am. Our honeymoon was glorious - First to Disney and a stay and the luxurious Grand Floridian and then to Hawaii. And then we came home, and real life began. We had an adorable little first floor apartment across from the train station in Fairfield. Chris commuted to NYC and I finished up the last few weeks of summer vacation. That winter we decided to look for a house. We moved at the end of February and found out we were having Molly in April.

To say life has taken us on a roller coaster ride, is, quite frankly, an understatement. We were kids when we got married. Boy, did we grow up fast. Through it all though, Chris has remained my constant. I loved him when we got engaged, I loved him on a whole new level when we got married, and then the love deepened again the first time I consciously saw him hold our daughter. She was so small, and he was so gentle. You could see the love radiating from him.

Marriage is not easy. It's not the stylish thing to do. It's a commitment. There will be hard times. Times like now when the purse strings barely stretch to fit the ever growing pile of bills. Times where you watch your child unconscious in the ER and anger fills ever part of you. Times where the garbage is overflowing and the clothes are folded wrong and the toilet seat is up. Times that I have yet to experience in my relatively young marriage. But, I know, without a shadow of doubt, that Chris will be there - right by my side, working through it as my partner. It's not me against him.

There are times I look for the argument, that he just doesn't want to give. There are times when I am so crabby, even I can't stand to be around me! But, bless his heart and soul - Chris is there. We took our vows. To be there for better and for worse. I know the road ahead of us is not paved and smooth. I know we will encounter challenges we cannot even fathom at this moment. But I look behind me at the road we have already traveled and at the couple smiling their faces off as they took their firsts steps as husband and wife and I know there is something good here. Whether we just got lucky and found our perfect matches, or if we were destined to be - I am thankful for every day I get to be Mrs. Christopher Renz.

I can't help but be a sap when I talk about our relationship, there is a lot of love in our lives and we thank God for that every single day!

Friday, July 15, 2011

Play Dates are Great...

Play dates are Great, but I am tired!

We had a very busy week this week and capped it off with double-decker play dates today! This morning my dear friend Erin (we taught together in the early years at West Shore) brought her 2 little ones over to play with Kennedy. "T" is a 4-year old boy and "I" is a 2-year old girl. Kennedy was unsure at the beginning and hid her face and herself from our guests. She warmed up after we went downstairs to the playroom. She loved "T's" energy and enthusiasm, and seemed entertained by "I". They played with every toy downstairs and then transitioned well for some outdoor fun! I had thought ahead and blown up the spare round pool in addition to the princess castle. The kids frolicked, swam and at munchkins (quite a treat). They then came inside for a light lunch and a little more play. By that time, it was already time to pick Miss Molly up from school. Kennedy seems to really love other kids, and she is definitely around them a lot, but it makes her nervous. I'm not sure if it's sensory overload, but it might be. She definitely seemed to handle things better when she was expelling energy in a rough and playful kind of way. The more she and "T" splashed, bounced, and ran around - the happier and more comfortable she became!

Then, this afternoon, we had FINALLY (Molly asks every day!) scheduled a play date with Molly's beloved Chloe and her twin brother Chris. C&C I will call them! They were as excited as Molly to come to our house. The three big kids and little Kennedy were bouncing as the congregated in the living room. We quickly changed into swim suits and out the door we went. Kennedy stayed to herself and splashed and just took it all in. Molly attempted to twirl a jump rope with C, and then attempted a hide-and-seek game with C&C. This was particularly amusing to watch as Molly hides in the same place every time, and then never checks to make sure somebody is seeking! The kids finished up with outside and went down to the playroom for some dress-up, musical instruments and other toys. By the time they finished, it was 5pm, Daddy was home and we allowed some Wii time. It is important to note that Molly, being the electronic addict that she is, is only allowed to play Wii for less then 1 hour and only on Friday, Saturday, and Sunday. It is also the most prized possession, which she knows she loses if her listening ears are not turned on. "If Mommy (or anybody) counts to 3, Molly loses Wii!". By then pizza was picked up, the kids and the parents settled in for some dinner and then the kids finished the evening up with a little sitting around the fridge for a sing-a-long. It was super cute to see them gathered around the Leap Frog boom box singing. They are so sweet and no one is ever excluded, including the smallest member of their group.

My kids were wiped, as was I. They played a little IPad, played with a few toys and were off to bed, hopefully to sleep through the night! It was another wonderful day, to cap off a wonderful week!

Thursday, July 14, 2011

Playground Fun

Tammy and I decided that "Bodie's Place" ( a new boundless playground in Milford, CT would be the site of our Birth to 3 session today. It was a fantastic session at an incredible playground. Boundless does it right, and all access is so important! One of my favorite functions of this playground was the way they had it divided into 2 sections. One site for the 2-5 year old set and one site for the 5-12 year old set. One of the hardest things when you have a small child, or a child who has motor difficulties is the obstacle of typical children bounding up and down the play area.

Kennedy was in her glory. She just climbed up and down the stairs for awhile. She loved the bridges and watching the other kids around her. She was so cute, and would laugh and smile at other kids - although did not engage any of them in her play. Keddy was actually so excited to have Mommy and Tammy to garner attention from. We ran, we climbed, we did swings, we did spinning chairs, we did bouncing caterpillars, we did slides, played store and "rode" a school bus. This was all in the scope of an hour! It was a fantastic session and I would highly recommend a trip to this playground to any one with children!

Playing on the bus with Miss Tammy

It was Mommy's turn to ride the bus

Wednesday, July 13, 2011

Win one for Mommy!

So, during our multiple morning rituals this morning, I went outside to clean the kid's little pool and fill it for the hot day that lie ahead. I had, unfortunately, forgotten to put it up last night, and a lovely neighborhood animal (probably the super-squirrels) broke a hole in the lining and the inflatable part. Major bummer!

Kennedy and I took Molly to school and came home to have a productive Speech session with our beloved Sarah! We discovered what we sort of knew. Kennedy is showing atypical in this area, with her Expressive Language scores significantly higher then her Receptive Language scores. (Almost all kids are the reverse) We had a good session though as we worked on First and then, and starting to learn some colors. Then Kennedy and I went to the beach.

This is a great activity to do when I am one-on-one with either girl. Kennedy's safety awareness is so poor, I have to stand in the water to ensure she doesn't try to cross the Long Island Sound by foot. Even when Molly's there, we have to be right in the water, because she just isn't safe without us. I occasionally look at the majority of other parents sitting on the beach, just letting their children frolic. I wonder what they think of me, no more then a foot from my girls - but honestly, I don't care - my kids are safe!

I got Kennedy to leave the beach by exciting her in our next activity - eating a bagel. I have never met a child who loves Dunkin' Donuts Cinnamon Raisin Bagel Twists quite like Keddy does. She even willingly rinsed off with me before eating it! Then we picked up Molly. By this time I had formulated my plan. You see, Molly's been giving me a real hassle about playing in the pool outside. She loves to swim, but isn't a big fan of the kid-size pools. However, it's far too hot for her to be outside too long without being wet! So - I said to her, I will take you Target and let you pick out a kid-size pool, if you promise me you will use it. She was excited and picked out this Princess Castle thing with a small size. Definitely not made for my tall girl, but it was put to extensive use this afternoon! The smiles on their faces and the giggles flying through the air told me everything! It's been a good day. I'm going to take it - I don't know what tomorrow brings (except school, therapy at the park and a play date with a good friend) but you have to embrace the good days - and scrap the negative pieces!

Tuesday, July 12, 2011

Sensory Senosry all around

This has been a particularly rigid week for my Kennedy. As we know, Keddy is currently diagnosed on the spectrum with PDD-NOS. While, we (her therapists, doctors, and family) aren't quite sure this is the proper diagnosis for her - it is what fits right now, particularly when it comes to sensory processing.

Yesterday, Molly wore shoes with laces. Molly rarely wears shoes with laces. Kennedy flipped out! Then Kennedy needed to make sure she picked out my shoes (thank goodness she picked matching flip flops!) and her shoes (again matching!). Then when I wouldn't let Keddy climb the bar stools to sit at the counter, she decided it was a good idea to be stuck under them. We then had to proceed out of the house, down the stairs, into the car and to Molly's school in a very regimented order. Every time I stepped out of place, I heard about it with screams of contempt!

We then had OT with Keddy's amazingly talented Birth to 3 OT Steph. We love her! She's so in-tune with the kids and with what's on the cutting edge of their needs. As an added bonus, our fabulous teacher Tammy followed the session up with one of her own. Kennedy's Annual Review is due this month (I can't believe she's been with Birth to 3 for a year!) and they wanted to go over scores with me. It's so sweet, they were preparing me and bracing me, since some of the scores were really bad - but I could have predicted the outcomes of the tests. I wasn't surprised, but relieved that there is documented proof of Kennedy's struggles. How else will we help her if we don't know what to target?

Her scores were extremely low in the sensory profile, except for hearing - so low that it appears 98% of the population functions better then she does (it's a new standardized test - which is incredibly beneficial for obtaining services!). Her fine motor actually tested ok. But her self-help, safety awareness, and gross motor all tested well below average. We have speech tomorrow, so we'll see how those scores turn out. One of the frustrating things for Kennedy is that her cognitive skills are at or above average. She's got all this knowledge in there - but it doesn't always know how to come out. No wonder she throws herself or objects to the floor so frequently. Or better yet, spins herself in continuous circles without getting dizzy!

So - I'm left not knowing quite what to think. There are different schools of thought on Sensory Processing Disorders, although little debate that sensory issues are extremely relevant and can be debilitating. There is a school of thought that would classify SPD as it's own diagnosis, however most doctors I have spoken with classify it as a piece of a larger disorder such as autism. This then leaves me to ponder the relationships between the 2 girls issues. Molly has seizures, and Kennedy - although we were concerned for awhile, does not appear to have seizures (we aren't out of the woods; you never are). Molly tests on the spectrum and so does Keddy. Kennedy clearly has sensory issues, but I could have answered every question on the test and more the same for Molly. And so the Mommy Medical Detective will keep documenting, observing, and researching.

Kennedy working on a 24 piece puzzle

Kennedy and her completed puzzle
After all these years though, I've learned to rejoice in their accomplishments and abilities and while I acknowledge their disabilities, I try to help them get the most out of every experience. Today I will celebrate the fact that Molly has an actual best friend, Chloe. Someone she asks me to invite over every day, someone she considers her friend - this is a big thing for Molly! And for Kennedy, I will celebrate that she ate almost her whole bowl of soy yogurt with a spoon and got none on her bib or shirt and that she continues to build 24 piece puzzles all by herself at only 2 1/2 years old!

Monday, July 11, 2011

It's going to be one of those nights...

Things were going pretty well this evening until a half hour after we put her to bed, Molly came wandering out in to the living room. This is honestly something she has never done before. It's so hard because she couldn't verbalize what was wrong, and has never been able to. Honestly, she's seemed a bit "out of it" all day. She's called me Daddy like 6-8 times, been unable to find the right words to answer questions, and just seemed a little bit zoney. It could be the heat, or something else.

When she came out here, she was first saying she was scared and then asking us to go to the hospital. It just breaks my heart to hear her say this. I know it means something doesn't feel right to her, but she can't tell me what it is. She finally did tell us that her tongue and chin hurt - I think this means her throat. I gave her some Tylenol, hoping it would stop the pain and let her get some rest.

It's taken a few years, but we try really hard to read the signs in Molly. She does get sick quite a bit, and she has had a very difficult winter and spring illness wise. So, tonight, I will once again sleep with one eye and one ear open while the others are trained on the video monitor. We will be lucky if she stays in bed all night long...
and then we'll see what tomorrow brings...

Mommy's learning not to freak out, but to know that it is so rare for Molly to tell us something hurts, or to act out of routine - that when she does, we go on high alert!

Saturday, July 9, 2011

Technology is my friend!

Today was my niece's 6th birthday party. A wonderful day to celebrate with family, and a happy day for a special little girl. But, oh goodness... a 3 hour drive each way with Molly and Kennedy; girls who don't like changes in their routine or big crowds of people they don't know. Oh - and let's throw in a hot day for poor Molly who doesn't regulate temperature at all. But, we can do this, or so I tell myself - and when it came down to it - we did!

I must say Molly and Kennedy are great in the car. We gave them a good breakfast and made a quick stop at Target to pick up a few last things (and it allowed Molly to stretch her legs). The girls decided on Tangled and, thanks to the DVD player we installed when we bought the car, neither one of them can kick or throw the DVD player - leaving Mommy in charge! We made it to about Fairfield before Molly said, "Mom, did you bring the IPADS?" Well - of course I did, but I wasn't caving so easily. I'm trying very hard to get Molly to read and understand a digital clock - so I push a little bit. There is some whining, but alas whining is met with more time on the clock. Finally at 11am, Mommy caves and Molly gets to play IPAD - Cooking Mama is currently her favorite app and she gets so excited when she earns a new dish to cook. The pro of this app - she wants to try the dishes she is cooking, and is actually requesting VEGETABLES!!! Who knew?? Now, of course the squeaky voice in the other car-seat pipes in with - "IPAD TOO??". Thanks to the generosity of "Madi's Friends" we do have a 2nd IPAD and Keddy is soon thoroughly engrossed with Handy Manny Flash Cards.

I decided to only let them play for a half an hour, since we wanted them to nap - oh best laid plans! I gave them the half hour warning at the beginning and then a five minute and two minute warning. Both surrendered their beloved devices and watched the remainder of Tangled. We're now in New Jersey and they are still not asleep...I even put in UP, which puts Molly to sleep every time! No go.... so I put in Finding Nemo and they are very content, but hungry. We arrived in PA a little early for the party, so we decided to take them to Sonic. Their bellies were full and they were very excited to see their cousins, aunt & uncle, and grandparents.

Amazingly, the girls transitioned to the party house perfectly, but, as planned, we got there early. Everyone was familiar and it worked in our favor! As others arrived, we were able to transition to the pool and the kids were so happy. Hubby and I were both in the water with them, heck we're always with them. Between Kennedy's lack of fear for anything and Molly's coordination and motor planning issues plus heat sensitivity and seizures - we are always in the mix with the kids, wherever we go. We do try not to hover, or be a helicopter parent as it were - but we have to keep the kids safe!

Pool time came to an end and then the meltdowns came. You could see it building. Molly's eyes were darting about, she was crying and unable to process what we were saying. She started running away from us, and fighting us - but I was able to calm her down with the IPAD, of all things. I was able to calmly talk to her and get her to sit, with her cooling vest on and make meals for Grandma on her IPAD. She did have one brief seizure during this time, which made me so glad I had her sitting down with me. After the seizure was over, Molly was able to abandon the IPAD and play on the slide, join in the birthday song (something she usually isn't able to handle) and eat cake with a table full of children. (Keddy was the one upset because she couldn't blow out the candles - but hey you can't please everyone!)

I always hear from older generations about how they just played in their day. I know, I played too. Technology for me was Mario Brothers on the original Nintendo, Tetris on my Gameboy, and Oregon Trail or Carmen San Diego after booting the computer in DOS mode.  But, this is a different world. Technology is an integral part of my kid's lives.  If I can use technology to entertain my children, appeal to their visual learning style, provide extension activities for them, feed their sensory needs, and give them the brief escape they need to cope  - then I am going to! I don't think we abuse the technology, but it's power is amazing!

When we left PA after 6pm, we knew we needed our very sleepy kids to stay awake for the almost 3 hour ride home. They watched the end of Nemo and then chose Enchanted - a personal favorite! When Molly asked for the IPAD again, I submitted and let them play for the ride home. The two of them were cooking, coloring, constructing puzzles, and decorating sticker books. And the best part - I didn't have to pick up a single crayon or lost puzzle piece nor did I have to repair a broken sticker. I had 2 exhausted kids, who were able to cope with the distraction of their technology! They made it home, and both were fast asleep within five minutes of hitting the pillow.

Lesson learned today: let your children be your guide - really listen to what they are saying. The meltdown today wasn't Molly being bad, it was Molly saying something feels funny and I don't know how to tell you - help me! And now this very sleepy Mommy is going to get some rest. Happy Birthday Princess Morgan - Hope you have a fabulous party, we certainly enjoyed it!

Friday, July 8, 2011

Reflections on Molly

Let's see. Seven years ago today, I was putting the finishing touches on our seating chart and programs for our upcoming wedding (I must remember our anniversary is coming - July 17th!). I had just finished my second year of teaching music to middle school students. And although we were never "rolling in the dough", money wasn't a huge concern: Our monthly bills were paid, I could go shopping and we could even eat out more then once a month! Seven years ago, I knew nothing of seizures, I knew very little about autism, I knew even less about my ability to handle a crisis. It's amazing the things that change your life. Some of the hardest experiences I have ever had, have been the most influential.

Fast Forward two years to July of 2005. I was four happy months pregnant with our very first baby. We had bought a house, and were busy preparing for parenthood - as if that preparation is actually possible! It was November, election day to be exact, when trouble started for me. I had horrible pains shooting through my back. I went to the doctor, I went to the ER - I was diagnosed with a UTI and sent home with an antibiotic. I got no better, I got worse. I couldn't keep anything down, Percosets (prescribed for pain) wore off after a half hour. I couldn't sleep, hot showers were the only temporary relief I could find. I couldn't even make it to school to teach - I made it through a portion of the Teacher Production of Charlie Brown, but to this day - couldn't tell you what I was doing or singing throughout. Multiple doctor visits, blood work and my insistence landed me back in my OBGYNs office on Monday November 14th. I wasn't there for five minutes before they sent me to the hospital. I was oblivious, thought I'd be home that night, didn't even call my husband since my mom was with me. After all, my baby wasn't due for six more weeks! I should have known then that Molly wouldn't follow the "normal" rules, and that she would determine her own path in life. She came into the world that night via emergency c-section. I was unconscious and monitored very closely. She was sent to the NICU. I didn't even hold her until she was over a day old. She was a miracle, all 4lbs 13oz of her!

Molly came into this world fighting and she has taught me what it means to fight. It means never giving up, never putting a limit on what someone is capable of because of their diagnosis or illness. Fighting for your child is a mother's instinct. Molly was sick a lot, a very cranky infant who needed constant attention. She had nine ear infections in her first year alone and spent more time on antibiotics then off. Molly got tubes 3 weeks after her 1st birthday and then exactly one week later, December 4, 2006, had her first seizure.

If you've never had to watch your child seize, unconscious and struggling, it's heartbreaking. As a mother, it is ingrained in you to protect and to help your child, but there is nothing you can do for them in that moment. Her first seizure was a day care, I rode in the ambulance from day care to the hospital holding the oxygen mask over her face. I also felt the first jerk that signified her second seizure that same day, this one lasting over 30 minutes and resulting in a four day hospital stay. I have fought for her every day of her life. First to prove that something was wrong, when all outsiders saw was a beautiful happy baby, and then to discover what was wrong. I have fought for proper early interventions, for a unique school schedule, for air conditioning in her classroom. I have been fortunate to have the right people on her side, from doctors to teachers - people believing me and understanding the complexity of Molly.

We are still fighting, we don't know exactly what's wrong with Molly or why it is happening to Molly. I don't know what things will look like in ten or twenty years, I don't know what things will be like tomorrow! We've had to miss parties, activities, and events over the years. There are a lot of "no you can't" or "that's not a good idea" with Molly. However, as I said, we are fighters. We have created parties and activities that are safe for Molly. We have searched out a dance studio that is compassionate and knowledgeable to accommodate her special needs. We have befriended understanding people, who love our children for who they are and aren't scared of things getting tough. We have educated ourselves. We travel to Boston multiple times throughout the year to get her the best care we can. We won't give up!

I have spent too many nights by her bedside in the ER and the hospital. The nights at home have been spent watching her on her video monitor. My mommy radar is on full alert at all times. Sometimes I can just tell something's coming by the look on her face. It has taken years, but the doctor's office doesn't question me when I call any more; unfortunately it usually is something...

Before I had Molly, I used to watch parents of children with obvious disabilities, particularly those parents of the kids I had the privilege of  teaching. I used to think, I don't know how they do it, I don't know if I could do it. But now, I do know how they do it. It's love. I don't look at Molly's life as burden but as a gift. Don't get me wrong. Our days are not all princesses and tea-parties. There are plenty of moments when I cry out of frustration and anger, where the worry and the anxiety leave me sleepless and feeling helpless - but then I look at my beautiful daughter and she looks at me and says "I just love you Mommy" and my heart melts. I waited a long time to hear those words, and they are a treasure no one can ever take away.

"I just love you too Molly"

My "special" kids

This is my first attempt at blogging, but my days seem to lend themselves to stories, and I'd like to share them.

Firstly, I am blessed to have a devoted husband and who matches my "witty" remarks each step of the way. He has been my partner through all the ups and downs life has given us. Our oldest daughter, Molly, is 5 1/2. She is our roller coaster: up and down, round and round, we never know quite what is coming next. From seizures, to autism, from constant illnesses to unknown issues and everything in between - we've become quite the "experienced" parents! Our younger daughter, Kennedy, is 2 1/2. And, because nothing is ever simple or easy, Kennedy is like the maze or hall of mirrors at an amusement park. She's bright and charming, but has many sensory issues, as well as autistic tendencies. Both girls are diagnosed on the Autism Spectrum. Both girls have smiles that light up a room, and both girls keep us on our toes!

Each day, a new adventure begins. I learn something new each day. Whether it be something about myself, or something about my family, or something about a medical or developmental condition - the school year is never over in our house! Small victories, like cleaning up without being told, or eating yogurt without spilling, or being told "no" without a major meltdown are like winning and Olympic Gold Medals in our house. We have learned to appreciate the small things, and we try to "go with the flow". For 2 people who once planned their vacations to the minute and constructed each day based on a timed schedule, this is huge!

Whether I entertain you, or offer you some sound advice, I hope you enjoy the stories of my "special" kids, because they are special. They may be classified as special needs, but they are two amazing kids who bring us so much happiness and have taught us to live every day with a smile on our face!